I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: lou on November 03, 2009, 12:44:30 AM
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Hi everyone.
Well have just woken up having had worse night of sleep ever. Basically lay awake all night listening to the machine. Am lucky I have a day off work today as feel knackered! Kind of hurts a bit to lay on my exit point of tube is that normal? I know everyone on here says this gets easier and you get used to it but guess I'm not feeling very happy about it today (its only my 3rd night on pd).
I was all ready to have a big rant when I logged on but to be honest all I feel now is a bit sad. My mum and dad are coming down to Exeter today. They are pretending they want to go shopping but they hate shopping and I know they just want to call in and check I'm ok! Bet my mum will get really upset when she sees this machine. I feel bad cos I know they are finding it really hard that I'm on dialysis so I find myself trying to be overly positive around them. The docs wouldn't let me mum donate and my dad had a kidney removed because of cancer earlier in the year. One time when I did really break down in front of them it was horrible because my dad starting crying and he never cries!
I dont know, just finding this all a bit tough at the mo. My boyfriend (who I live with) is being amazing but sometimes I worry that its a lot for him to deal with. Its his birthday this weekend (31) so I feel like I should get him something pretty good after all hes been through but blokes are so hard to buy for arent they?! Anyway I guess I need to pull myself together and sort the house out before my parents get here and then go birthday shopping...
sorry for this moan /rant dont want to bring others down but its like a kind of wierd therapy writing on here!
lots of love to everyone
Louise x x
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I can only say that it will get better. But missing sleep is tough - I hope you can nap today. :grouphug;
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Lou, I know exactly what you mean about the machine, it huffs and puffs and spits and then it alarms, have you had one of those yet, that scares the sh** out of you. You jump up in bed get the destruction's out and try and figure out what to do. We have all done this. The blinking light on the front, I taped that over, I put a thick sheet under the machine to try to muffle the noise, that worked a bit. My husband has restless leg syndrome so he was turning and twisting all night and some mornings I would have to
unravel him. . it is a big thing that is happening to you, you will get down, please try to stay positive. Hope you find some thing nice for your boyfriends birthday. Keep coming here and posting even if you want to rant , do it.
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Lou
You don't have to listen to the machine all the time because there is a way to make it silent between fills.
After your first fill has finished and you're in DWELL TIME do this:
STOP THE CYCLER USING THE RED BUTTON, wait a few seconds then SWITCH BACK ON USING THE GREEN BUTTON. After a few seconds of swishing and gurgling the noise stops and the cycler then dwells in complete silence.
You can then settle down and to go to sleep. If you're not too much of a light sleeper the other drains fills and dwells shouldn't wake you up. I used to sleep through them when I was on APD. If the next fill does wake you just do the same again afterwards and then at least you'll have some peace and quiet between fills.
This is something the meds don't tell you about but believe me it works.
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It doesn't sound like "moaning' to me. It just sounds like real life. There are people in here that really moan, what seems like, every time. Glass half full or glass half empty. It's your choice. No matter where you look, there's somebody that really has it bad. I was at the V.A. a number of years ago and there was g guy that had lost his lower half that walked aroung on his hands. He appeared to be happy. The world is full of people in situations that make our problems seem really small. :2thumbsup;
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Being an extremely light sleeper, and an insomniac for over 40 years, I dreaded going on the cycler. Like you, I had major problems with it and ended up crying my eyes out one night, sitting just outside my bedroom on a couch in the hall (my hall is almost a room in itself, being 11 feet wide). Finally it dawned on me, if my extension allows me to leave the bedroom and sit outside in the hall, why the heck isn't the cycler in the hallway! The next day I changed it. Interestingly, I occasionally leave the bedroom and go to sleep on my couch in the den, which is right next to the cycler, and it no longer bothers me. If you have the room to move the cycler outside of your bedroom (you'll definitely need one or more extensions), go ahead and do it. Y'all need your sleep!
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Oh, I really hope things get better for you soon. We all go through down times and I agree that this place helps a lot. We all understand what you are going through, we are here for you.
I just wrote my whine post today so you aren't alone. :)
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Hi Lou!
Glad you posted, I've been wondering how PD is going for you...sorry it's not going so great yet :( I can't relate to your experiences on PD, but I have good and bad HD days too.
I'm thinking we have the same parents! Yours sound so much like mine. They really wish there was something they could do to make things all better for me...and I feel bad because they are worrying so much. How far away do yours live? Mine are 3 hours and in some ways I'm glad they aren't closer, because they would probably be over here all the time fussing over me!
I hope the shopping went great and I am praying for you! Hope PD gets easier every time :)
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Lou
You don't have to listen to the machine all the time because there is a way to make it silent between fills.
After your first fill has finished and you're in DWELL TIME do this:
STOP THE CYCLER USING THE RED BUTTON, wait a few seconds then SWITCH BACK ON USING THE GREEN BUTTON. After a few seconds of swishing and gurgling the noise stops and the cycler then dwells in complete silence.
You can then settle down and to go to sleep. If you're not too much of a light sleeper the other drains fills and dwells shouldn't wake you up. I used to sleep through them when I was on APD. If the next fill does wake you just do the same again afterwards and then at least you'll have some peace and quiet between fills.
This is something the meds don't tell you about but believe me it works.
I did this the other day when i had to go out during the 4th dwell and noticed it went completely quiet. But i only hit the stop button so when i came home it was beeping telling me to hit the start button and start the 4th drain. So i guess by hitting the stop then start button it goes to the drain without alarming?
I had those troubles too Lou, slept more when the cycler finished. Some days are still like that but i don't work at the moment.
I can understand how tough it must be on your parents knowing they can't give you a kidney.
I'm going to try what ken suggests. I've dimmed the screen and lowered the alarm volume. My cycler is also lower than my bed so it isn't at the height of my ears, every little bit helps.
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Awww Louise, this made me ever-so slightly sad too :-(. I really hope that you take to PD and that other people's advice works.
As for your boyfriend ... My Blokey always feels he has to treat me like a princess now that he's given me this 'life sentence' (his words, not mine!), and it is hard for us as partners to see you go through so much (there's no denying that), but we don't need extra special presents to know that you love and appreciate us. Sometimes just a beautifully written personal message in a card and a favourite meal, followed by snuggles in front of a good film is the best present we could have. However, I do know what you mean about buying something extra special ... since Blokey became ill I've tried to go out of my way to buy him things that are extra special so that he feels happier and knows I have no intention of leaving him to deal with all of this alone ... it's sort of a backwards take on what you've said! This probably makes me a hypocrite and you are therefore welcome to ignore the middle bit of this paragraph!
I hope that you had a lovely positive time with your parents and I look forward to hearing what you bought your boyfriend for his birthday!
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Writing is theraputic, especially when you are trying to be brave and positive for your loved ones.
Have you thought of trying one of those sleep noise machines???
Stay strong and keep writing!! :beer1;
Hope you and your boyfriend have a wonderful weekend.